Monday, July 27, 2015

After the emotional ups and downs of last week, we were treated to a week of just ups this week. When I left you last week, I'd just called our pediatrician's office to try and find out the results of Lime's newborn screening tests, which would tell us whether or not he had CF. At that time (July 20), the office denied all knowledge of the results and said they would be available at his two week checkup. I was annoyed but resigned.

On Tuesday, we had Lemon's checkup at the CF clinic. It was a great
visit--he's up to 25.5lb, or almost the 40th percentile for weight on
the WHO charts. More importantly, at the moment he's gaining weight at
15g/day, dramatically exceeding the goal of 10g/day that his doctor had
set for him. After the weigh-in, the nutritionist came into the room
and took a peek at Lime, who was with us, sleeping in the stroller,
remarked on how cute he was, and said "It's such great news that he
doesn't have CF." And I said, "News? I haven't heard any news." But, a
few moments later, the doctor came in and gave us a copy of the test
results, which confirmed that not only does Lime not have CF, he
actually has no CF-causing mutations at all, making him the most
genotypically normal person in our family. Interestingly, the test
results were available July 16, but somehow no one thought to call us
and tell us, for which they apologize, etc. Ah, Wisconsin (and I'm not even telling you the latest on getting Lemon's vest...).
Anyhow, we're thrilled with the outcome, and look forward to the challenges of raising two boys with such different needs.

On Thursday, Lime had his two week checkup. He left the hospital at 5lb 7oz, but managed to pack on a pretty amazing 13 oz in the intervening time, putting him at 6lb 4oz. The doctor asked me if I had any questions, and the only one I could think of was, "Is it really true that he doesn't have any scheduled doctor's appointments til he's 2 months old?" Welcome to raising a "normal" child.

Lemon has continued to adapt well to the arrival of his new brother. In fact, the only time he has really displayed any jealously at all was when Nona was holding Lime. He could care less if Daddy or I hold the baby, but Nona is his and his alone (as far as he is concerned).

As you can see, the blog is in the process of undergoing a bit of a makeover, including a new title. Many loyal readers liked the suggestion of using the word "citrus" in the title to reflect the two stars of the show, Lemon and Lime. "Salt" refers to CF, which is fundamentally a disease of salt not being in quite the right places--resulting in, among other things, the exceptionally salty sweat of people with CF. I am hoping to use my maternity leave to learn more about blog layouts and features so I can spruce things up a bit, so don't be shocked if things change from week to week for the next few weeks as I explore. And, if there are features that you like or don't like, or things I don't think of that you would like to see added, let me know!

Monday, July 20, 2015

Some weeks, we get a mix of the highest highs and the lowest lows. On Sunday of last week, we brought Lime home from the hospital and began the all-too-brief period of bliss with a newborn baby at home. On Tuesday, I lost my last living grandparent, my Grandma Frieda, in whose honor Lime is named (his real name, of course). Frieda was a great inspiration to me and to all 13 of her grandchildren, with whom she forged very individual, very deep bonds. She was a member of the MIT graduating class of 1945 (predating my own graduation by a mere 53 years)--one of just a handful of women brave enough to enroll at that time. She carried out a war-time courtship with my grandfather, Felix, largely by mail as he served in the military and she remained home in Boston attending school. After 6 years, they married and in due time had four sons, my father and his three brothers. She dedicated herself to raising them and viewed her family as her greatest and most challenging creative project. As we grandchildren came along, she devoted the same intense energy and focus to her relationships with each of us, and taught us by example to improve ourselves through education, culture, and our relationships with others. She was the matriarch of our family and a true force to be reckoned with, and we will all miss her and cherish her memory.

With a week-old baby in the house, I was unable to travel to Boston for the funeral, marking yet another family event for which I remained stuck here in Wisconsin. At least thanks to modern technology, I was able to view the moving funeral service and talk to some of my aunts, uncles, and cousins afterwards. It was certainly not the same as being physically present but much better than not participating at all.

With all this running in the background, we tried to make this week as normal as we could for Lemon and Lime, since they of course had no idea what was going on. Their presence was a huge comfort, especially because young children really live in the moment; nothing that has happened in the past makes much of a lasting impression, and the future is inconceivable. Spending hours each day in that mindset makes even the most painful times go by.

So, we did some of the usual fun things--the playground, construction sites, the train set--and also went on a family field trip to the county fair. Lime was pretty oblivious to the whole experience, but Lemon absolutely loved the fair--all sorts of interesting animals that you could see up close, a huge tractor, and baby chicks and ducklings that he could touch.

Other than that, we are still playing what we've come to refer to as the "Wisconsin Waiting Game." I've mentioned before that everything here seems to take at least twice as long as it did in Boston, and now we're waiting for two things--Lemon's vest and the results of Lime's newborn screening to find out whether he has CF or not. Lemon's vest is still tied up in some phase of paperwork. As of our last contact with the company, they were waiting for a letter of medical necessity from our doctor, which, as Papa Bear put it, is probably on its way to them on a camel as we speak. As for Lime's results, we were promised when I was pregnant that his testing would be expedited. I called his doctor today to ask if there were any results yet, which there were not, and might not be until Thursday. I declined to mention at the time that Lime is now 10 days old, the same age as Lemon was when he was diagnosed in Boston, and the fact that it took Lemon 10 days to get diagnosed in Boston provoked a hospital-level inquiry and implementation of new quality control guidelines. We have a clinic visit for Lemon tomorrow so rest assured that they will be hearing my (sleep deprived, unedited) opinion on all this!

Monday, July 13, 2015

It really doesn't get much more exciting than this week. On Tuesday morning, Papa Bear and I sneaked in a quick breakfast date before our consultation with the OB at our perinatal clinic. At our meeting with the doctor, we reviewed all the information we had about Lime, and the various risks and benefits of the different courses of action available. The doctor's strong recommendation was that we deliver by 38 weeks 2 days at the most in order to maximize Lime's potential future growth and minimize the risks that he would be exposed to by continuing to grow in a sub-optimal uterine environment. Even though I was still really nervous about an induced labor, the doctor seemed to have no doubt that this would be the best course of action for us, so we decided to go ahead. We scheduled an appointment for 4pm on Thursday.
Wednesday and Thursday were both very weird days, since we knew that a huge change was right there on the horizon, but nothing had actually changed yet. I had a lot of pangs of preemptive nostalgia for our time as a family of three, which has been really wonderful. I started to get a little apprehensive about how I would handle having to divide my attention between two kids. I packed a bag. I mowed the lawn, and made one last grocery run to ensure that no one would starve to death while I was in the hospital.On Thursday afternoon, I drove myself to the hospital, picking up Papa Bear at work along the way. We checked in to the delivery floor, met with various members of the staff, and made a plan to start the induction with a gentle 12-hour treatment. Once we'd made that decision, Papa Bear went home to take care of Lemon, and I settled in to spend a boring and uncomfortable night in the hospital by myself. The worst part of the whole thing by far was that, because of the induction, Lime had to be continuously monitored. Between him moving around and me moving around, the monitors kept losing him so every time I finally dosed off, a nurse would come in and have to wake me up to reposition them under a big elastic band on my stomach.

Not much changed between Thursday night and Friday morning, when Papa Bear came back to join me. I started the first of two rounds of a 4-hour treatment. Papa Bear worked away on his laptop in the delivery room, while I watched the Wimbledon semi-finals and paced around first our room and then the entire floor. After the second 4-hour treatment, the midwife placed a catheter to help pave the way for Lime's exit. Papa Bear went home to visit with Lemon for a while, so I read a book, paced around some more, and had dinner. After dinner, when Papa Bear returned, the midwife and I agreed that it was finally time to start Pitocin, the medication that really induces contractions. This was the part that I'd been dreading the most, but thanks to the very long preparation and extremely low dose that we used, I have to say the labor wasn't really any different than what I had with Lemon. The major difference was at the very end--whereas Lemon took 3.5 hours of hard pushing to enter the world, Lime narrowly missed being delivered in the bathroom. He was born at 11:45pm on Friday.

We recovered in the birth room for a while, and then went up to the maternity ward to stay for a few days. That whole experience was pretty similar to what we had when Lemon was born--lots of people traipsing in and out of the room at all hours of the day and night, asking to see parts of you that total strangers don't usually ask to see, terrible food that's available al. The only difference was that I spent much more of the time alone, since Papa Bear had to go back home to tend to Lemon. We owe an absolutely tremendous debt of gratitude to Nona and Uncle Jared, who pitched in a huge amount of time to take care of Lemon during all this excitement. We came home Sunday mid-day, and are working becoming a functional family of four. More on that next week!